Global Morality and Life Science Practices in Asia

Assemblages of Life

M. Sleeboom-Faulkner

• Publisher: Palgrave Macmillan
• Year: 2014
• Print ISBN: 9780230274839
• eBook ISBN: 9781137317407
• Topic: Politics & International Relations
• Subtopic: Social Policy
• Index: Politics & International Relations

Empirical studies of life science research and biotechnologies in Asia show how assemblages of life articulate bioethics governance with global moralities and reveal why the global harmonization of bioethical standards is contrived.

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Introduction: From Global Moral Economy to Assemblages of Life

What is biotechnology about? Simply put, biotechnology puts knowledge of life, or life itself, to use in order to sustain, repair or enhance life. The United Nations Convention on Biological Diversity¹ defines biotechnology as ‘Any technological application that uses biological systems, living organisms, or derivatives thereof, to make or modify products or processes for specific use’. Biotechnology harbours life-changing potential to cure the diseases of many patients, and promises evolutionary enhancement of the human species, to the delight of some (Harris, 2011). However, advanced biotechnology, including genetic engineering, tissue engineering, genomics and stem cell research, is controversial, and not only for the hope it has sparked in—and the disappointment it has brought to—patients and their families. It is controversial also for its potential to radically change humankind and its environment on this globe (and beyond), for the financial and human resources it absorbs and for the uncertainty that surrounds it owing to its experimental nature. ‘Bioethical’ guidelines have been drafted to facilitate consensus about research conduct and to bolster its development, while trying to prevent and minimise the occurrence of ethical problems and allegations. In many ways, these guidelines are experimental, especially as they tend to vary internationally in their wording, spirit and application.

Bioethics as an academic discipline; however, is overburdened, taking on discussion that requires far more scientific expertise and human experience than can be offered by the relatively limited number of scholars with a background in the humanities, law and medicine involved in its development. Like demography and epidemiology, bioethics addresses questions related to issues of life and death with moral and practical implications for the wider society, including the running of hospitals, life science research, the pharmaceutical industry, and policies on public health. While bioethics plays a key role in the regulation and justification of the life sciences, as implicated above, at the same time it is shaped and conditioned by what I introduce here as ‘life assemblages’.

The concept of life assemblage as a heuristic methodological tool serves to define communities that share questions related to the definition of what is ‘a life worth living’. It also refers to the material, cultural and political conditions of communities that share notions and discourses about how to sustain a life worth living and about fundamental issues of whether and how biomedical science and technology should serve, maintain, repair, improve, enhance and extend life. A life assemblage develops under particular socio-economic conditions, shifting boundaries of knowledge, changing conceptualisations of the body, and forms of political organisation that underlie activities of assembling and reassembling life through technological interventions. A life assemblage shares questions about the biomedical intervention in the lives of citizens, the storage of human tissues and data on their lives, the kinds of human life given birth to, and notions of what is a normal or natural life, and what is not. Life assemblages are not new in the sense that some of these questions, for example on how to extend life, to a certain extent have been important in societies for many centuries. Thus, a major quest of Chinese Taoists was attainment of longevity (Sivin, 1980; Cooper, 1990). The question of longevity allowed reflection about a limited number of life issues that, in principle, were thought to be resolvable within the Taoist paradigm linking alchemy to notions of society. But, in life assemblages, the social and political boundaries that define moral life are continually in flux. In life assemblages, members share mindsets that assume moral change towards life as inevitable and experience the transgression of ethical boundaries as a normal result of developments in science and technology. Whether members of life assemblages agree or not, assemblages of life are organised around questions of whether or not to sanction life, give life, intervene with life, extend life, transplant life and end life on the basis of scientific knowledge and technological intervention. In life assemblages, rather than making decisions to find a cure for a particular disease, store blood for emergency situations or protect a community from a contagious disease, life science communities, including pharmaceutical industries, hospitals, charities, regulators and ‘bioethicists’, collectively engage in activities that focus on acquiring knowledge about life, repairing life, regenerating life, combining life and justifying life interventions on the basis of ethical principles, guidelines and decisions. Such ‘rules’ are developed by various social groups, including national ethics committees, regulators, policy-makers, and international organisations, and implemented in interaction with life assemblages. Although the legitimacy and representativity of bioethical rules are usually contested, members of life assemblages share a direct or indirect preoccupation with the discourse around and the questions of whether, to what extent, and how to assemble and lead life.

In life assemblages, socio-political institutions continually redefine and integrate the inputs of religious, cultural and spiritual traditions with more formal bioethical notions to guide life science and biomedical research. On the one hand, this allows life assemblages to become increasingly complex, varied and specialised, hampering communication between life assemblages. On the other hand, the discussion on norms and values within life assemblages increasingly concentrates on and interconnects issues of birth, reproduction, life and death together. Thus, questions concerning the relation between birth and the productivity of populations, the utilisation of the death of one to save the life of another, and the transplantation of stored tissues and organs have become part of a discussion linking debates about euthanasia, eugenics, regenerative medicine and stratified medicine. These themes are subject to moral deliberation and regulation in societies, and are analysed and systematised as approaches in the relatively young disciplinary field of bioethics. Although it is not clear what and whom exactly these bioethical approaches represent, they have become part of national, regional and global life assemblages. For the boundaries of moral traditions and religious taboos are shifting, not so much by dint of shared decision-making informed by religious, social and cultural values, but because a worldwide industry of life science research and biomedical business activities produce new life potentials that have overtaken what societies thus far have imagined possible. Scientific and industrial innovation in the life sciences, then, has led to the adoption of regulatory and bioethical measures that societies still have to come to terms with.

Bioethical Capacity Building

International co-operation in the global biomedical economy links the collaborative efforts of scientists and medical professionals between many countries. But the role of science, technology and bioethics in the creation and transfer of new knowledge and wealth has been typically framed by high-income country policy-makers. Focusing on Asia, this book investigates some of the practical and conceptual implications of bioethical capacity building in genomics, biobanking, genetic testing and in stem cell research in Asian societies. Bioethical capacity building is generally thought to be important to the development of the life sciences. First, it has protective potential. For instance, it aims to protect patients and donors of human tissues through bioethical guidelines on informed consent and experimentation. Bioethical guidelines can also protect researchers from litigation, and from allegations of immoral research. Second, it provides a mode of stability in a risky field of science innovation. Thus, for funders of research innovation, the presence of bioethics committees and guidelines serves to guide or prevent research that is accompanied by a high risk to patients, researchers, reputation, and the financial or academic success of projects. Third, the existence of bioethical capacity can elicit trust from the public, people potentially involved in the research, and support discussion and the acceptability of new developments in the life sciences.

In a global context, however, bioethical capacity develops amidst the existence of diverging standards of wealth, diverging cultures and diverse political preferences. Bioethics, then, may be of diverging significance to patients and researchers, and play a different role in the implementation of research at different locations. This book aims to contribute insights into the different drivers of commercial and academic research institutions and forms of bioethical capacity building by state and non-governmental organisations, while exploring the ways in which moral discourses of development and economic growth are framed and, increasingly, reframed through government policies in Asian countries and the need for international collaboration. Bioethics as shaped in the context of a life assemblage is contested. Thus, ‘bioethics’ in European and American socio-legal discourses is seen both as a form of ‘human rights’ (Ashcroft, 2010) and as ‘dubious’ (Fiester, 2013). In this volume, the emerging voices of bioethics in Asian societies are central, and we trace how these are formulated, represented and contested in the management of life science discourses across societies.

Discourses on Asian societies portray Asia in public discourses variously as backward and advanced, wild and civilised, authoritarian and democratic (Dennis, 2002; Sleeboom, 2004). The appearance of both technological bandwagons and individual pioneers in Asia has complicated the image of recent life science developments in that part of the world. Asia has become dotted with cutting-edge life science hubs, such as Biopolis in Singapore, Penang Biotek Park in Malaysia, Biotec Centre in Thailand and many centres in the metropolises of Asia, including Delhi, Bombay and Bangalore in India, Seoul in South Korea, Tsukuba, Osaka and Kyoto in Japan, Shenzhen, Beijing, Shanghai, Guangzhou and Tianjin in China, and Taipei in Taiwan. Newspapers report intrigues around ‘rogue’ stem cell therapies developed by Guita Shroff’s NuTech MediWorld in India, Huang Hongyun’s Western Hills Hospital in Beijing and Tianjin, Beike company in Shenzhen, BCRO in Indonesia, and Restoring Hope and Theravitae in Thailand; and the media has fully exploited the scandal around the fabrication of science data in South Korea by the team of Hwang Woo-suk and the reportedly nefarious stem cell research practices in China—all in all resulting in a dubious image of some science efforts in Asia. At the same time, we hear about the soaring numbers of international peer-reviewed science publications in India and China (New York Times, 2010; The Royal Society, 2011), successful cloning efforts by the reviled Hwang Woo-suk team and the pioneering induced pluripotent stem cell (iPS) developments by Yamanaka at Kyoto University in Japan. Moreover, we hear about the successful sequencing results in genomics by Beijing Genome Institute in Beijing and Shenzhen, the establishment of large-scale biobanks in Delhi, Taipei, Tsukuba, Singapore, Taizhou and Kunming, and the success of pharmaceutical conglomerates in India, China and Japan. While the number of scientists and companies keen to collaborate with counterparts in Asia is increasing, uncertainty reigns about the ethics of life science research and applications. This uncertainty has led to questions about the development of ethics in life science ventures and collaborations among researchers from diverging regulatory backgrounds, both within and between countries.

Bioethics and Global Moral Economies

A politicised view of cultural values assumes that ethical values can be negotiated, compromised in exchange for political resources. And, if a currency has international credibility, is dependable and generally convertible, it can facilitate the exchange of values, and effect a change in political positions and the redistribution of political resources. This notion of global moral economy, discussed in Brian and Charlotte Salter’s article ‘Bioethics and the Global Moral Economy’ (2007), shows the important role allocated to bioethics in the global moral economy: it provides an apparent neutral currency with which cultural values can be measured, positions priced, and deals arranged. Indeed, without an active moral economy, the economic viability of the life sciences is though to be severely constrained (Salter and Salter, 2007: 559, 561). I use this political notion of global moral economy here as foil against the concept of life assemblages, which emphasises factors significant to the locality in which life sciences and bioethics develop and are applied. Bioethics, referred to above as an apparent neutral currency of the global moral economy, is more popularly described as ‘the study of typically controversial ethics brought about by advances in biology and medicine’ (http://en.wikipedia.org/wiki/Bioethics). As the question of what is controversial ethics largely depends on whose voices are heard, as implied above, discussions on bioethics have to be understood in the context of the kind of media, public debate, academic system, civil society, regulation, culture, life science and biotechnology that characterise a community.

Even though some awareness exists that bioethics is variously regulated and implemented variously in countries with diverging political and legal regimes (Jasanoff, 2005), it is still assumed that a trading in life values ‘is possible because there is a shared understanding of both the value of the political resources involved and the rules of the game and a common acceptance of the need for political movement’ (Salter and Salter, 2007: 559). Although counter-narratives are incorporated within the prevailing body of bioethics through the construction of ‘legitimate differences’, outright opposition to the bioethical search for compromise dominant players see as a disqualification for which the penalty is marginalisation, if not ostracisation, from the regulatory process (Salter and Salter, 2007: 561–2).

As internationally prevailing bioethics has been framed in the context of traditionally dominant life science and health institutions mostly located in the USA and Europe, the question arises of how biotechnologies in Asia develop in the sociocultural and political contexts of moral economies there. In the twenty-first century, also in Asia, large investments into the infrastructure and dissemination of the life sciences are propagated and justified by promises of innovative technological applications in regenerative medicine, genetic diagnosis and repair, and the advancement of knowledge in fields ranging from molecular biology to translational research. But the application of new biomedical technologies in societies has led to the identification of a host of social, psychological, religious and financial problems. Initially, solutions to these ‘bioethical’ problems were explored mainly through the disciplines of philosophy and law. In the USA and Europe, following the funding of genomics research initiatives in the 1990s, major sums were invested in the study of ethical, legal, social and institutional aspects (ELSI) of genomics and regenerative medicine. But, gradually, the role of the social sciences in this ‘novel’ area gained importance. The initial emphasis on the legal and philosophical aspects of the life sciences was a result of the need to regulate and protect the work of scientists, to facilitate the progress of such work, and to reassure the public of its safety and protection (Fox and Swazey, 2008). When it became clear that public views of the life sciences and their applications in society were going to have an impact on science funding, innovation and technological advancement, the demand for social science studies increased.

Bioethical Governance and Global Assemblages

Initially, social studies of the life sciences were concentrated in relatively wealthy countries with long-established biomedical disciplines, such as the USA, countries in Western Europe, and Australia, New Zealand and Japan. But soon interest grew in investing and collaborating with Asian countries that were starting to invest heavily in the life sciences, including China and India. Reasons for collaboration in the areas of genomics and biobanking ranged from the presumed availability in these countries of unique, ethnically isolated and medically naïve populations to the existence—at the time—of less stringent regulatory regimes (Pomfret and Nelson, 2000; Sleeboom, 2005). The exploitation of such regulatory ‘bioethical vacuums’ (Sleeboom-Faulkner and Patra, 2008) did not last long once it was recognised that research could only flourish if recognised as ethical. And it is especially bioethical governance and the ELSI aspects of the life sciences that are thought to be of relevance to current research and discussion platforms on the life sciences in Asia (Bionet; Eubios; Ethox; SMAP).² An important question here is whose ethics come to represent official ethics, and how. For although the research involves countries, interest groups and markets across continents, the terms and discourses of bioethical governance have been largely pre-defined in the context of life science development in a few wealthy countries. Political, academic and social institutional histories have been largely ignored in the standardisation of bioethical guidelines and in the assessment of the bioethical capacity in low- and middle-income countries: the ability to adapt to ‘international’ standards and bioethics institutions without major investment has been uncritically assumed. In the meantime, a major concern for scientists in collaborative life science initiatives remains the availability of ‘international’ standards of bioethics and safety to safeguard the quality of research and its ethical applications (Harris, 2002; Hennig, 2009; Hill, 2009; Kiatpongsan and Sipp, 2008).

Following in the footsteps of lawyers and philosophers, social scientists and bioethicists have been asking how bioethical governance can be introduced to governments, in hospitals and in science institutions (e.g. Bionet Report 2010; Ethox ISSCR; SNAP). Most Asian countries have followed examples from the USA and Europe in setting up bioethics institutions to facilitate science research. However, in most Asian countries, the social sciences have been largely excluded from the process. To better understand the relation between life science, bioethics and society in Asian countries, this book examines the ‘situational ethics’ or politico-economic circumstances (Ong and Chen, 2010: 13–14) in which regulatory activities (moulded via modern nation-state conditions of regulation, healthcare, policy-making and cultural cosmologies) develop as a result of advancements in the life sciences across modern nation-state boundaries. The reason for studying Asian life assemblages lies in the need to take seriously the interaction of what is regarded as dominant ‘global’ moral economy in the life sciences with ‘local’ moral economies in Asia. The fact that we can think of bioethical guidelines in terms of the ‘global’ here is indicative of the marginal position of the bioethics of late-coming ‘local’ economies. What is needed, then, is to show how the multiplicity of bioethics in Asia appears to be ‘localised’ as a result of a process that is interpreted as the ‘globalisation’ of life science research and biotech applications in transnational settings. In this process, as explained below, transnational competition and collaboration in the life sciences involve the development of diverging life assemblages.

The global articulation of bioeconomies and bioethics has been described from various perspectives: as based on global free-market competition, where scientists and companies are in competition with each other (including through multiple forms of collaboration, collusion and exchanges); and as based on broad neoliberal principles, where nation-states and political federations (such as the European Union, Association of Southeast Asian Nations, etc.) facilitate and back up the competitiveness of their life science industries (Gottweis et al., 2009). Transnational developments in the life sciences have also been analysed from the point of view of infrastructural and historical inequalities (Sunder Rajan, 2006). From this perspective, ‘free market’ competition in the life sciences builds on institutional, regulatory, socio-political, biological and health inequalities between geographical regions and nation-states. If we hope to understand the transnational dynamics of biotech developments, then free-market competition, neoliberal and protectionist nation-state policies and institutional developments (including economic politics, cultural traditions, social organisations and material resources) need to be analysed together as a global assemblage (Ong and Collier, 2005).

The concept of ‘global assemblage’ refers to ‘projects of various kinds that have global reach and which are refracted through particular localities as scaled and structured versions of the dominant paradigm’ (Ong and Collier, 2005: 4). According to Ong and Collier (2005) global assemblages are intrinsic to the process of globalisation and the capacity for similar ideas and practices to manifest in a wide variety of locales and work by very different rationales. The articulation between locales occurs ...

Table of contents

• Cover
• Title
• Copyright
• Contents
• Preface and Acknowledgements
• Notes on (Co-)authors of the Case Studies
• 1 Introduction: from Global Moral Economy to Assemblages of Life
• 2 Reassembling Populations: Questions of Eugenics in China, India and Japan
• 3 Biopower and Life Assemblages: Genetic Carrier Testing in India, China and Japan
• 4 Human Genetic Biobanking and Life Assemblages in Asia: Transnational Moral Economies of Health, Progress and Exploitation
• 5 Life Assemblages of Human Embryonic Stem Cell Research in China and Japan: Bioethical Problematisations and Bioethical -Boundary-​-Making
• 6 Scientists and the Public in East Asian Life Assemblages: Risk, Debate and the Professionalisation of Bioethics
• 7 Life Assemblages and Bionetworking: Developments in Experimental Stem Cell Therapies in India and Japan
• 8 Reframing the Global Moral Economy: Life Assemblages and Research Objects
• Notes
• References
• Index